Sharing a Life Altered by Multiple Sclerosis

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One of the most frustrating aspects of life with chronic illness is the constant state of flux. It is true of all types of multiple sclerosis, and relapsing/remitting MS certainly lives up to the name.

The fact that many of these on-again off-again symptoms are invisible to observers makes it a particularly difficult series of emotional adjustments, especially if you are prone to worry about what other people think.

It’s hard to be taken seriously when people see you looking the very picture of health one day and claiming to be the opposite the next. It probably doesn’t help their perceptions when we go to great lengths to hide the truth.

We hear a lot about maintaining a positive attitude in the face of adversity, and most of us work at keeping our complaints to a minimum and putting on our best face for all the world to see. Most of the time this works in our own favor, but occasionally the challenges of life with chronic illness loom so large as to become overwhelming.

Since receiving the diagnosis of relapsing/remitting MS in early 2004 I have, for the most part, managed to have more positive days than not. The not-so-positive days have been largely hidden from view, revealed only to a few friends and the closest of family members. Let’s face it, nobody wants to be considered a complainer.

I don’t want to be seen in a negative light, but as a positive person who lends kinship and support to others through my writing on the subject of MS and chronic illness. On the other hand, the bad days we all experience cannot be avoided. Addressing them openly and honestly doesn’t make me a negative person; it makes me human.

That was my thought process recently when I tentatively posted brief snippets about my latest MS relapse on Facebook and Twitter. Not complaints and not written in anger, they were instead brief and honest snapshots from a life altered by MS.

The response took me by surprise. Friends, acquaintances, and complete strangers sent me emails of support and understanding. Those who also live with MS or other chronic illness were, of course, able to see beyond the few words I’d written — I had struck a nerve. As far as I could tell, no one saw it as complaining or that I was passing on negativity. It was taken for nothing more than the truth that it was.

I have no less faith in the power of a positive outlook on life, but more faith in the people around me to accept the hard truth once in awhile. I’m not saying that anyone needs a play-by-play of our lives any more than we need one of theirs. What and how much of ourselves we choose to share is very much a matter of personal preference.

In a previous article on the topic of positive thinking, I wrote, “I wonder if, by keeping my bad moments private, I have contributed to the pressure to keep up appearances and if by putting my best face forward, I’ve given the impression that I’m always full of sunshine and roses… let it be known now… I have moments when no matter how hard I try, I cannot fight the frustration. So I acknowledge it, deal with it, and purge it. It’s not particularly pleasant, so I generally get myself back on track rather quickly. It is what it is.”

I would like to add something more to that statement: There is no need to keep these feelings to yourself. It is possible to share the bad as well as the good and to do it without wallowing or complaining. It is simply stating the facts of life. If they can’t handle it, that’s not your problem, but people just might surprise you.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

sorry didnt mean to post that twice. anyway more money should be spent to save our hospitals, clinics, and help for people who need it such as the ms patients. where will they go apart from 'home.' so silly closing everything down just for profit.

used to work with ms patients not long ago, it is a terrible disease. They need all the practical care as possible. Hydrtherotherapy is very good for many people with this disease and can be enjoyable with relaxing music and a professional 'after care' for hydrotherapy ms patients. It is a shame that so much money is wasted on digging out the rainforests and natures natural places, wasting money, lives of all species and destroying it for everyone just for money. Money in the hands of a greedy few, to sell all the stuff big companies stolen from nature. I wish these big companies and governments would look after their own peoples all over the world and see how much people are suffering. Here in uk, the money is wasted on silly stuff such as a great big statue. BUT WHY HAVE THEY WASTED THE MONEY ON THIS, AND THE ABOVE AND YET THEY SHUT DOWN ALL THE HELP FREELY AVAILBLE TO PEOPLE WHO NEEDED IT. EG. MOST DEVESTATING HOSPITALS FOR SUPERMARKETS, AND SMALLER DAY CLINICS FOR MS PATIENTS. I asked my boss at the time, where will the ms patients go. He said, 'home.'

used to work with ms patients not long ago, it is a terrible disease. They need all the practical care as possible. Hydrtherotherapy is very good for many people with this disease and can be enjoyable with relaxing music and a professional 'after care' for hydrotherapy ms patients. It is a shame that so much money is wasted on digging out the rainforests and natures natural places, wasting money, lives of all species and destroying it for everyone just for money. Money in the hands of a greedy few, to sell all the stuff big companies stolen from nature. I wish these big companies and governments would look after their own peoples all over the world and see how much people are suffering. Here in uk, the money is wasted on silly stuff such as a great big statue. BUT WHY HAVE THEY WASTED THE MONEY ON THIS, AND THE ABOVE AND YET THEY SHUT DOWN ALL THE HELP FREELY AVAILBLE TO PEOPLE WHO NEEDED IT. EG. MOST DEVESTATING HOSPITALS FOR SUPERMARKETS, AND SMALLER DAY CLINICS FOR MS PATIENTS. I asked my boss at the time, where will the ms patients go. He said, 'home.'

That is shocking but not surprising. The medical community, drug companies and government departments have their heads in the sand... Lets take an already hurting population and make them even worse! I think we need to look at other treatments that dont involve drugs. Drugs have not shown a significant effect thus far. The CCSVI liberation treatment sounds promising and it focuses on a different theory than what [they] have been going on. Its worth having a try. Check out my group @ MS Liberation - End Multiple Sclerosis.

Not usually in this section, but thought I'd seen an article on MS here, so wanted to put this info. out there for ppl's benefit & education, in case it's of help, & now I see Eliza has just mentioned this drug here. This was an alert I'd just received today, from a health publication I'm subscribed to:

"~FDA approves bird poison for MS patients~

Clearly, the FDA has it out for people with MS.

Bird brains that they are, they just approved Ampyra, a drug to supposedly help patients with multiple sclerosis walk faster. But here's the catch... the drug (a form of fampridine) is also a commonly used bird poison.

It's nasty enough to induce seizure-like symptoms in birds to scare them away from crops. So this next fact should come as no surprise: Ampyra can cause seizures in HUMANS.

On top of that, the other so-far known common side effects of the drug include relapse of MS symptoms, insomnia, dizziness, headache, weakness, balance disorder, back pain, and burning, tingling or itching of skin... all of which sound very bad for someone already struggling with MS.

Keep in mind, these are the common side effects found among the 540 patients from the clinical trials. Just 540 people. Imagine what kind of damage it can do with 54,000 patients. Don't be one of them."

Yesterday, I received the following email (below) which basically asks for patients who have been on Fampridine-SR to ask to speak to the FDA Panel next week.

I agree that sometimes it's easier to get 'straight' news from the financial sector than even the drug company itself. Notice how this email links to their announcement back in August and doesn't mention any doubts regarding approval at this time.

@ Janice - coming from the perspective MS sufferer, it's hard to openly admit to others that you have MS for so mamy reasons. For me, personally, I only told the people that had to know: immediate friends and family. Even then, I didn't let on how severe the symptoms are. For me, the fewer people who knew, the better - in my mind. I guess then I could be 'me' and not the MS patient... I haven't figured it out yet! I just recently admitted to the general public that I had it on Facebook. That was a MAJOR step for me but I also fear that it means that I am accepting the disease and letting it defeat me. Be patient and supportive.